Anyone else have a Redundant / Tortuous Colon?

Posted by onaquest @onaquest, Nov 7, 2018

Hello. Anyone else out there that has a redundant/ tortured colon? I was diagnosed with this a few years ago. I’m usually ok, but if I get constipated, I get sick for a week or two. Last year my gastroenterologist referred me to a surgeon for urgent surgery to remove some of my colon. The surgeon I ended up seeing (not on the recommended list by my gastro doc due to others not available for a long time) said he believed I could live with the redundant colon if I followed a low FODMAP diet. I tried the diet religiously, scientifically (I’m a scientist), and I found it’s not the food I eat that causes these bouts of constipation. The only item I’ve found that might cause the bouts is coffee every day. An occasional coffee seems fine. What has helped me stay regular in a big way is Benefiber (or any pure wheat dextrose generic) three times per day. Lots of fluid.

My gastro doc was upset with the surgeon and said I’d regret not having the surgery. He fears I will end up in an emergency situation. I have searched the Mayo site and don’t find anything about redundant/ tortured colon. Are any Mayo docs doing research or treat this condition? Anyone else suffer from this too?
Thank you! -Jayne

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Thanks for this! I have added brussels sprouts, broccoli, green beans, but not yet celery or asparagus. Will do. I drink plenty of water, eat veggies and fruits AND I exercise, so I think I have a combo of motility and length/redundancy of the racetrack.

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@sue225

I have had irritable bowel-C for over 40 years. In the last three years and a half years the constipation has become severe. Up until then, I rarely used laxatives (could count on one hand, the # of times) One gastroenterologist recommended the fodmap diet, (so restrictive and I am already restricted as a celiac) metamucil and miralax twice a day. That seemed to alleviate the constipation but all that miralax and metamucil aggravated my irritable bowel. That same gastroenterologist said in his report "her bowel will just have to get used to it": it didn't) In the last three years, I have also gone from being on no medications to three: metoprolol, prolia and repatha (evoculomab injection). One or more of these drugs has made the constipation worse.
Recently, I stopped using Miralax. It no longer seems as effective and was giving me daily lower abdominal cramping to the point where some days it was uncomfortable to walk. So much gas and terrible bloating. (Interesting how all of its advertising says no bloating, no cramping) Then, I tried milk of magnesia and it works but the cramping for me was beyond tolerable. So, a few nights ago, I tried two senokot and that worked without cramping but I'm sure if I use it daily it will be the same issue. Lizness gave me abdominal pain and bloating.
Over the years, I have taken probiotics but didnt see a difference.
My last colonscopy was 9 years ago (CT colonography and sigmoidoscopy about 3 years ago--one nonserious polyp)and it showed a "long and twisty colon".
I am waiting for my gastroenterologist appt next month. Actually beginning to wonder if there is a solution. Prucalopride called Resotran was suggested, (believe that helps with motility). However, I have an arrythmia that is now well-controlled and Health Canada has a warning saying proceed with caution re resotran if you have those problems and the drug safety clinic could not assure me it would be safe. I really do believe it is the medications that have made the IBS-C worse. That's the thing with modern medicine. The drugs fix one problem and often create some new condition (from side effects) that then needs to be treated.

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I’ve been having colonoscopies at least as far back as 2010, (family history). I NOW since ‘18 have long, torturous colon. Had ERCP & MRCP for dilated bile duct. Just had 1st anorectal manometry...so not only do I have “IBS-C, diverticulitis, restricted mobility of colon, I have type 1 dyssynergia?!!! I’m so sick of all this. I have had diarrhea my whole life, now I can’t go at all. Just a hip revision surgery 11-20. Had original hip in 2004. When I went to Orthopedic surgeon, the 1st thing they did was test blood for metal ions. Of course it was positive. I thought maybe all my issues stemmed from that. At this point, I guess I may never know. I drink dinner (protein drinks), would rather not eat anything solid BC the pain is absolutely unbearable & I can take a lot. But this is ridiculous. I’ve thought quite seriously about killing myself, especially when my blood must’ve been thick w/ metal ions. I really think I was being poisoned...mostly mentally. After rev. All the suicidal thoughts have diminished. But my stomach is....shot, for loss of a better term

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@lesliedenny

I was just diagnosed after a painful colonoscopy. Unfortunately, the doctor didn’t stop to talk aboutit so I am doing my own research. For the last several years, since my last coloscopy, I have had episodes where I cannot relieve myself then it feels like I am going to pass out, followed by a drop in blood pressure with cold sweats. These episodes take up to 30 minutes to finish and I have to lie down afterward. I am wondering if they are related. I certainly appreciate everyone’s experience and input.

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I have noticed...not so recently, most Dr.s, after they’ve done they’re “procedure”, given your findings, they are out of the picture. There is NO CONTINUITY in care anymore. I have done more research than I care to think about. Too many problems, too many solutions, too many topics! I thought that’s what Drs were for.

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That is EXACTLY right. "Ta-daaah." Then they're done. Getting them to move to the next level of digging for the underlying issue is a huge feat. My anorectal manometry and sitzmarker tests plus the 3 PT sessions to train my anal sphincter cost me $1500-$2k and I'm still severely constipated.

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@sickofbeinsick1

I have noticed...not so recently, most Dr.s, after they’ve done they’re “procedure”, given your findings, they are out of the picture. There is NO CONTINUITY in care anymore. I have done more research than I care to think about. Too many problems, too many solutions, too many topics! I thought that’s what Drs were for.

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@sickofbeinsick1 Where did you go to get that kind of medical treatment? Certainly was not Mayo MN...Mayo and I keep in touch via the prescription renewals and when they require that I check-in the pharmacist tells me.. and during the Pandemic I have had 2 telephone sessions with my GI doctor there in Rochester. Now that I have had my 2 shots we plan an onsite visit in May ...(I live a 3 hour drive away from Mayo MN.). When I do other than GI visits at Mayo my GI doc always mentions those visits or problems during our sessions.. Mayo has a different pay arrangements with doctors than most places.. so given that they Mayo doctors act differently ...and as a team.

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@ken82

@sickofbeinsick1 Where did you go to get that kind of medical treatment? Certainly was not Mayo MN...Mayo and I keep in touch via the prescription renewals and when they require that I check-in the pharmacist tells me.. and during the Pandemic I have had 2 telephone sessions with my GI doctor there in Rochester. Now that I have had my 2 shots we plan an onsite visit in May ...(I live a 3 hour drive away from Mayo MN.). When I do other than GI visits at Mayo my GI doc always mentions those visits or problems during our sessions.. Mayo has a different pay arrangements with doctors than most places.. so given that they Mayo doctors act differently ...and as a team.

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If you don't mind my asking, what shots?

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@sickofbeinsick1

I have noticed...not so recently, most Dr.s, after they’ve done they’re “procedure”, given your findings, they are out of the picture. There is NO CONTINUITY in care anymore. I have done more research than I care to think about. Too many problems, too many solutions, too many topics! I thought that’s what Drs were for.

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My Health, My team! Perhaps the financial demands of the times require seeing more patients. i do request more records after a medical appointment, about a month later. I get tired of doing that. Sometimes I read about something that I would like to discuss with that provider.

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@pacificnw

LONG FIBER VEGES IS THE KEY!

I haven't seen this suggestion in this thread. I've had problems with constipation since I was a kid, but heard the phrase "tortuous colon" for the first time when I turned 50 yrs. old and had my first colonoscopy. What works for me is vegetables with long fibers - especially celery (raw) and asparagus (lightly cooked). The asparagus is the best. I've made it a mainstay of my diet. I cook it different ways to keep it interesting, although lightly roasting it in a 375 degree oven for about 10-13 minutes (depending on thickness of the vegetable) works best for me. I season it with garlic and herbs. I also think kale has long fibers, but I haven't found a decent way to prepare that vege. Asparagus is a great vege and it provides lots of health benefits beyond the fiber - so it's a great addition to any diet. Also, like many have said here - lots of water all day long.

In my opinion, eating celery (great with lunch - add some carrots!) and asparagus is a natural way to help your colon move things along without completely changing your diet. I love food as much as the next person, but don't want to have a special diet that interferes with my life. I stay active (walking, hiking, strength training), drink a good amount of water and use "outside help" (i.e., laxatives) only when absolutely needed.

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@pacificnw I cannot swallow long fibre veggies or fruits. I have a swallowing problem and these fruits and vegetables manage to make me choke.

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@ashweb901

That is EXACTLY right. "Ta-daaah." Then they're done. Getting them to move to the next level of digging for the underlying issue is a huge feat. My anorectal manometry and sitzmarker tests plus the 3 PT sessions to train my anal sphincter cost me $1500-$2k and I'm still severely constipated.

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@ashweb901 would daily Metamucil or generic psyllium fibre work for your constipation problem? I take psyllium fibre from a natural foods store every day and have eliminated my constipation problem (pun unintended),

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@rashida

@ashweb901 would daily Metamucil or generic psyllium fibre work for your constipation problem? I take psyllium fibre from a natural foods store every day and have eliminated my constipation problem (pun unintended),

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Once back in September I paired daily miralax with daily fiber for 2-3 weeks and was able to shift to fiber only and it was gloriously successful for almost two weeks. Then the fiber starts to pile up inside and lose all its moisture by the time it gets to the "business end." Thanks for the suggestion.

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